Updates

X-ray on Monday afternoon to check Leo's chest - just your routine, bi-monthly pictures to make sure no cancer has developed there.

MRI under yet another general anaesthetic is on May 18th to check the left-over chunk of (assumed dead) tumour.

We've definitely noticed Leo squinting more now the sun is out a little more here in the UK. So obviously, we wonder whether it is actually due to the weather or if he's having a few more problems due to the radiotherapy or initial tumour. I guess we'll find out when we follow up with Leo's oncologist post-MRI scan and in his next eye appointment. Unfortunately without putting any suggestion into a question, it's quite difficult to get a 4 year old to really tell you what the problem is with an eye which he knows has caused problems this past year.

We're also well on the way towards improving Leo's diet and the amount he is eating each day. Until Monday, which was exactly a year since diagnosis, Leo had not put on any weight in a year - well he had lost loads and then steadily got back to the same weight. He weighed 16.5 kg on Monday, May 4th, 2009 which is exactly what he weighed the day we went to the Children's Hospital for the initial MRI which would change our world forever on My 4th, 2008.

However, we introduced a rather quirky bedtime routine last Monday which includes an MP3 track of soothing words about eating well means lots of energy and playing outside, and doing lots of fun things...and since then he's not only put on nearly 1 pound in weight (in 5 days), he has also tended to eat a much wider variety of food without the stress and arguments each time we tried to encourage (and make) him to have food.

We have a treat for Leo lined up tomorrow. All 3 of us are off to ride on the real Thomas the Tank Engine and he doesn't know! Cannot wait to see the surprised look on his face at 11am tomorrow!

Thanks to you all for sending the cards and emails of support at this rather weird time - one year on since diagnosis and I think it's safe to say, we're so very grateful for all your support over the course of the past year. Will report on the x-ray and scan as soon as we know something and hopefully, fingers and just about everything else crossed, that we'll say no change. Nerves will be shredding between now and that follow-up with Leo's doc..yet again!!!!! Am sure it will get better.

Thanks again.
H, PJ and Leo xxx

365 Days

A year ago tomorrow our lives changed so significantly that sometimes it's hard for us to really remember life before the big C! However, despite many negatives which are well documented both here and in the minds of all those who know Leo, there've been many positives too.

I'll say that again because it can sound a bit weird...despite Leo having cancer, we've actually found things to be positive about. And yes, most days are really hard. Hard just to get our heads around life as it is now and any future that's mapped out for us all, but generally, on the good days we appreciate life so much more. After all, we do know families whose children are not going to make it and whilst that's still out there for our family, we're currently not there and so we need to be thankful for another non-treatment / non-cancer day, and every day until / or if our worst nightmares do come true.

And this is why the past few weeks with Leo have been simply amazing. He's not been at nursery as his energy levels are still so low, and therefore Leo and I have been doing things each day which make me so happy and proud to be his mum. Despite wondering whether the chicken pox are not out of his system yet (more spots this week - bizarre or what???), not eating and still tired, him not being at nursery school has meant we have spent some serious one-to-one quality time together. His behaviour has been impeccable which is a significant improvement and those anxiety concerns we had before he had chicken pox have dissipated - so perhaps all he needed was to not feel like we were dumping him at school and more time one-to-one with his parents.

Another scan in a few weeks plus yet another chest x-ray, although if Leo does what he did on Friday again, then we may be back at the hospital before these scheduled visits. He took himself upstairs to bed citing a sore tummy and that his legs hurt? Strange but then I guess there must come a point where if you're not eating properly and constantly tired that you're bound to feel like heading to bed and an adult would have done so before now!

So much has happened in the last 365 days and whilst, yes, of course, we wish life was different and cancer had not made us appreciate things we previously took for granted, it has and for that we're grateful.